Posted on June 24, 2017
Posted on June 24, 2017I wanted to speak to all of you from the heart for a few minutes (besides a health and circumstances update). I know that my posts can be a little wordy, but if you can stick with me to the end I would really appreciate it. I have had some serious ups and downs recently, not just physically but emotionally, mentally and spiritually too, and that is something I am going to try and be raw and real about.
As you all know these health difficulties have been plaguing myself and my family for decades, but especially my sister and I. And with this recent setback (again) it is so easy to feel depressed, lonely and hopeless....
Today on this sunny Saturday I think of all of you out there, socializing, having fun, seeing friends, being outside, doing things.... living normally. And for me this morning my POTS is acting up and it is hard for me to even stand without feeling breathless and weak and having waves of heat. (More on POTS below). Another day of my life sacrificed to the Lyme gods as they accept my life as an offering one day at a time (please no one be offended by this little metaphor).
So this is going to be another in a long line of weekends for me basically in bed resting. I have given about 2/3 of my adult life to this: go to work, go to bed, repeat. I'm back in that cycle where I have just enough strength to work my part time job....and not much else. I call these cycles many things, including Survival Mode and the Chronic Illness Coma. I feel isolated, forgotten, left out and lonely. I keep seeing the years of my life tick by and my life eroding away, with opportunities disappearing on a fading horizon.
Try and picture for a moment if this was your life for years and years, and you found yourself in your late thirties having your youth behind you having never properly experienced it. You are alone. You've never had a significant other or even an opportunity to get one, and you watch most of your friends live there lives from a distance doing "normal" things that you have never experienced and are not normal for you.
I had a very bad weekend last week; besides having a scare and being in the ER on Saturday, I was also very depressed and the enemy saw an opportunity to open a wound.
The mind can go down Dark rabbit holes so easily: This isn't living. Alone. Single. Sick. Struggling. My brain and body betray me. Thinking about eventually having my parents die and (gulp) Shiloh in time, and being utterly alone and destitute with no one to be a support is not a fun thought. I also feel like I am such a financial burden and my parents would be so much better off and more secure if I just died. (That's a major one Satan like to come at me with).
Thank you to a couple friends who encouraged me last Sunday and reminded me who I am in Christ, and who just listened and let me be real with my feelings.
That said, I am peeking back out of that dark corner and God is reminding me that faith and Who He is for me and His power over my circumstances have nothing to do with my emotions or mindset or the infections in my body and brain that are effecting those things.
After all, faith is all about what we do not see, what we do not feel, and relying on He Who dwells outside the shallowness of those things.
Why did I share all that? I don't think it's because I want pity. I want to be normal, I just want to live, I don't want to be a person that needs pity! No, rather I just want to be heard and understood and I feel like when I drop off the face of the earth that I don't do so to the people in my life as well, and I'm just forgotten.
I do want to thank the couple people who do stay in contact with me, it means the world. Just a text, just a "hi", nothing fancy, just knowing I'm not forgotten.
Thank you so much for reading this far.
As far as myself and my sister Holly as you know we are going through treatments right now to deal with some deep parasitic and other infections in our bodies that are not only gut related but are attacking our livers, kidneys and other organs too, and the treatment has been rough. I just did my retest lab work this last week to confirm what infections remain after phase 1 and how to approach my Phase 2 in this next round of treatment. I have had it confirmed that (among other things) I do still have Bartonella (http://www.tiredoflyme.com/bartonella-symptoms.html),
which are the two major Lyme coinfections.
My POTS which is usually mild also goes to more of a moderate degree when I have a flare up, and that's been difficult. ( http://lymediseaseguide.net/lyme-disease-and-postural-orthostatic-tachycardia-syndrome-pots).
My sister and I could use prayer that these treatments work, and that maybe this will be the beginning to the end of this multi-decade battle.
Lyme (collective term for Borrelia, coinfections and complications) is so hard to treat because it can change form, hide from the immune system, be antibiotic resistant, cross the blood-brain barrier and infect any and all parts of the body, and treatments are basically going layer by layer, getting deep stuff to come to the surface, and repeating the process.
A good metaphor would be weeding a garden: you pull weeds, you rototill, you use poison, you pull up roots and do your best with what you see. But you miss a few roots, you can't always identify every weed, and the "poison" ruins the soil so you have to keep replenishing as you're killing, and just when you think you got it all.... you find there's stuff you missed that starts growing and taking over again.
Here is also a good link on why treatments make you feel worse: http://www.tiredoflyme.com/the-herxheimer-reaction.html
Wow guys, thanks for sticking with me and hearing me out! Even with all that writing it is still just a summary.
Please also pray for God's financial provision as for this season expenses have again skyrocketed into about 5,000 a month.
I have been unable to paint again, and that has been disheartening. If anyone has any clever ideas for fundraisers let me know! (It would have to be in the realm of my capacity).
Thank you again for taking the time to read all this.
Posted on June 4, 2017
Posted on June 4, 2017Update on previous update :)
Phase 1 of the 21 day new med protocol is done. It was tougher than I realized; one day after finishing my skin infections are calming down and I also feel a little more human. There is really no other way to describe it than that, being that when your inflammation is higher than normal it DOES effect your brain and it can sometimes be like watching yourself go through the motions of life as an observer.
Hopefully the couple week break in between phase 1 & 2 will give my liver and kidneys a break as this has been tough on them.
Hopefully after phase 2 the Bartonella and other bugs will be dead for good, we shall see.
The treatments are pretty pricey ( about 2,100 for each phase), but if it helps solve some core issues it will mean (hopefully) less years of other treatments and trying to patch holes in my leaky boat and stop what has been attacking my internal organs and maybe give me a chance at normalcy.
Lyme (I use the term collectively) has been one long journey.
Thank you everyone who has been such a great support whether it be in prayer, or emotionally or financially 💚
Posted on May 6, 2017
Posted on May 6, 2017As many of you know I have had some progress in health and have been winning little battles along the way, but some things persist: autoimmune disease (mast cell overactivation disorder, etc.), and all the symptoms that go with it: chronic inflammation and pain, flare ups and food intolerances, P.O.T.S., chronic fatigue, edema, neurological issues.....
Holly and I are still digging away at getting to the bottom of why some things aren't getting better. Holly has been having some pretty scary symptoms including brain inflammation, intermittent loss of vision, horrible fatigue and other symptoms.
We have some excellent health care practitioners who are amazing and doing all they can, and treatments and meds continue to be expensive.
Yesterday there was a breakthrough; I saw one of my doctors to follow up on a test I had run a couple weeks ago; it actually went out of the country to a university that is doing some groundbreaking testing. Not only are they finding things labs in the US are not, but they are developing specific treatments to kill what they find. Apparently what I learned is that most labs here will only test for what is on the requisition, and nothing else, even if they find something they can't identify it isn't reported. So because they don't do this kind of intricate testing in the US there is a doctor here in the states working with a doctor overseas at this university (who actually used to live here in Washington!). In any case several things showed up which are serious, but it's good news because it would've gone undetected otherwise. I have an elevated white cell count, which is nothing new because that has shown up before, but what they did find is that I have some deep chronic parasitic infections one which attacks the gut lining and is deeply imbedded and is not treatable with normal antiparasitic's, one that is attacking my liver and one my kidneys.
So if untreated I could potentially be headed towards liver and kidney disease, and kidney disease is irreversible. Since the liver and kidneys have not been functioning properly all these years it makes sense that I can't detox properly, process things properly, etc.
As some of you may know because I brought it up in the past, I have been struggling with my liver and kidney function for many many years.
This help explains a lot of why all the autoimmune overreaction, the fatigue, swelling and other symptoms are not getting completely better even though the Lyme seems to be under control. (although Bartonella, a lyme co-infection did show up as still active). Getting treatment for the Lyme and coinfections has made huge difference, but there was still more to deal with.
All the mast cell overactivation disorder and other autoimmune issues cannot get better until this is dealt with.
Good news is that it is treatable with some specific medications they have developed at this university that does the testing. Bad news is it is $2,300 for the first round of 21 day treatment, and when I am done with that they have to retest and usually they have to do a second round of treatment at the same cost. (The test is also $788).
And that is just me! I think our entire family needs to be tested (Holly already has and will be getting treatment too). The costs are big, but God is bigger.
I am asking God to do some miraculous things and we shall see how He provides.
We could of course also use prayer in all of this, for healing and provision.
As a quick aside I could also use prayer that I don't at any time have a stroke of blood clot as one effect of all this autoimmune activity is that my blood is thicker than it should be and puts me at risk of clot and stroke. I am on some things to counteract this but I'm still at risk.
If any is able or know anyone who is, any financial help would be a blessing: